Advance care planning (ACP) is a process of thinking, talking, recording and sharing. It includes making decisions about personal issues and medical issues.
Sadly, at the very end of their lives many people who would prefer to live and die at home are taken or sent to hospital.
Escalation of care is often initiated when those caring for an individual do not know their wishes. Instead of the familiar home environment, those in their final weeks, days or hours are too often surrounded by the noise of hospital wards.
Hospital care is vital for palliative care emergencies and can provide the care some will need for their last days, but admission to hospital often also leads to additional treatments that are not clinically unnecessary, e.g. blood tests, scans, drips, catheters, antibiotics, ventilators, feeding tubes.
Understanding a person’s and where appropriate their loved ones’ wishes, can support a person to have the care at the end of their lives which they would like. Communicating these wishes to all professionals involved in a person’s care through an advanced care plan can support these wishes to be achieved.
There are lots of things any health or social care professional can do to help someone make an advance care plan. You don’t need to be a specialist.
Find out what they’ve got in place already. Make sure their wishes are recorded and shared so they can be acted on if, or when, they’re needed.
Encourage the person to think about what they would like to happen in the future.
However, some people might not feel ready to talk about their future care, especially if it includes making plans for when they die. Don’t force anyone to talk about it if they don’t want to. You can always let them know that you’re ready to talk about it if they change their mind.
The person might give you some cues or signs that they are starting to think about what happens if they become more unwell. This could include talking about:
what might happen to their loved ones when they die
not wanting to go into hospital for treatment if they become more unwell
not getting better
what happens when they die
what happens to their body after they die
spiritual and religious practices that are important to them.
3. How to start the conversation
The three main questions to think and talk about are:
What do you want to happen in the future?
What do you not want to happen in the future?
Who do you want to speak for you if you can’t speak for yourself?
Give the person time to consider the questions. Don’t be afraid of silence. If they are happy to continue you can prompt them to consider more specific details and make a plan as time allows. The plan should always come from the person themselves. People should be given time to discuss their plans with those important to them.
Remember: You don’t have to talk about everything at once, but be realistic with the person and those important to them. For example, even if they plan to be cared for in a certain place, it isn’t always possible to arrange it.
4. Record the person’s wishes
Make sure you record any conversations you have about advance care planning in the person’s notes. This means there’s a record of the person’s wishes for other professionals to follow. Use their words as much as possible. Ideally, this record should be written with the person so that you are both happy that it’s a good reflection of any discussions that have taken place.
5. Can advance care plans be changed?
Advance care plans can be updated if the person’s situation changes. They should be reviewed regularly to make sure that they still reflect the person’s wishes, and any changes documented and shared.
6. Make sure the person’s plans are shared
It’s important that advance care plans are stored somewhere where they can be accessed by whoever needs them. People can choose to share copies of their plans with their medical teams, solicitors and the people close to them.
Useful links:
advance-care-planning-quick-guide.pdf (nice.org.uk)
Gold Standard Framework - Advance Care Planning (goldstandardsframework.org.uk)
Planning Ahead: What matters most to you | Welcome (advancecareplanning.org.uk)
ACP and the Importance of Listening: Dr. Kathryn Mannix | #AdvanceCarePlanning - YouTube
New Planning Ahead tool launched | Hospice UK
End of Life Care in Frailty: Advance Care Planning | British Geriatrics Society (bgs.org.uk)
Advance care statement or advance care plan
This is a record of the patient’s wishes and preferences about their care. It may include information on their preferred place of care and preferred place of death. It might also include personal care needs such as dietary preferences and religious and spiritual practices.
Advance decision to refuse treatment (Advance Directive)
This is a record of any treatments that a person does not want to receive in a specific situation. For example, they may decide that they don’t want to be admitted to hospital if they get a chest infection. It’s called an ‘Advance decision to refuse treatment (ADRT)’, ‘Advance decision’ or ‘Living will’ in England.
If someone doesn’t wish to receive cardiopulmonary resuscitation (CPR) if they have a cardiorespiratory arrest, this can be recorded in a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) form. In Birmingham and Solihull we use the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) forms for people to document their wishes in case of a medical emergency.
Lasting Power of Attorney
A Lasting Power of Attorney is someone who is legally appointed to make decisions on behalf of someone else, if they lose mental capacity. A Power of Attorney is usually someone close to the person such as a family member or close friend.
There are different types of Lasting Power of Attorney:
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For financial and property decisions, this is known as Lasting Power of Attorney for financial affairs in England and Wales, continuing Power of Attorney in Scotland and Enduring Power of Attorney in Northern Ireland.
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For health and welfare decisions, this is known as Lasting Power of Attorney for health and care decisions in England and Wales and welfare Power of Attorney in Scotland. It’s not currently available in Northern Ireland.
1. The person is central to developing and agreeing their advance care plan including deciding who else should be involved in the process.
2. The person has personalised conversations about their future care focused on what matters to them and their needs.
3. The person agrees the outcomes of their advance care planning conversation through a shared decision making process in partnership with relevant professionals.
4. The person has a shareable advance care plan which records what matters to them, and their preferences and decisions about future care and treatment.
5. The person has the opportunity, and is encouraged, to review and revise their advance care plan.
6. Anyone involved in advance care planning is able to speak up if they feel that these universal principles are not being followed.
For more information download the universal principles for advance care planning document from the NHS England website.
Who might benefit from ACP conversations?
Any individual who wishes to plan for their future care or who may be at increased risk of losing their mental capacity in the future, including:
• people facing the prospect of deteriorating health due to a long term condition or progressive life limiting illness, e.g. dementia, frailty, kidney, heart or liver failure, lung disease, progressive neurological conditions, incurable cancer
• people with declining functional status, increased burden of illness or persistent physical or mental health symptoms
• people facing key transitions in their health and care needs, e.g. multiple hospital admissions, shifts in focus of treatment to a more palliative intent, moving into a care home, etc.
• people facing major surgery or high risk treatments, e.g. bone marrow transplant
• people facing acute life threatening conditions which may not be fully reversible
What are the benefits of ACP?
For the person:
• The person can consider, explore and share with others who, and what, matters most to them in life and how this might change were they to become less well. Many people feel more confident that they have gained more control of their own lives through doing this.
• The person should be able to expect to receive care and treatment which is more in keeping with what matters to them, as far as can be achieved, especially towards the end of their lives. This can include engaging with palliative care, and also connecting them to other services and support they may need to live well for as long as possible.
• The person can better understand which medical interventions may not work in their specific circumstances.
• The person can be more confident that what matters most to them will be known and taken into account as part of treatment decisions in the event of an unexpected emergency situation or should they become unable to fully participate in decision making.
For families, carers and those important to the person:
• Families, carers and those important to the person will be more content and confident in knowing that the person had ownership of the process and was able to make what matters most to them known while the person had capacity to do so.
• Families, carers and those important to the person will be less likely to have to contribute to decisions on behalf of the person without the person’s needs and preferences being explored earlier.
For health and care workers:
• Able to deliver better personalised care more confidently if, or when, the person becomes too ill to make decisions or speak for themselves. This is based on an understanding of the person’s goals, priorities and values documented through advance statements, and guided by legally binding ADRTs or LPAs for Health and Welfare where these exist.
• Reduced risk of doing something that the person would not want or delivering care in a way they would not wish.
• Improved communication and clarity about treatment decisions and reduced potential for conflict or misunderstanding between care teams.
For society:
Opportunity to promote living well and to improve quality of conversations and understanding about health, illness, death and dying.